Clint
Both Clint and Roger have the MCP gene defect and they live relatively normal lives. Clint was sick for a month in September 2002 and has not been sick since (except normal childhood stuff). We are so very lucky, I can't be thankful enough. I believe a key to Clint's success is avoiding dehydration. Whenever Clint has a gastrointestinal illness we start IV fluids immediately. Our pediatrician does it, or I take him to the emergency room. Roger had episodes in 1963, 1969 and 1990. We believe the transplant in 1991 cured the AHUS in him.
That's our story. We pray it doesn't change.
Views: 0
Comment
-
Comment by Linda Burke on July 23, 2009 at 11:52pm -
Hi Meg,
Hope your family is enjoying lots of summer fun together! It would be appreciated if you would go back and update your profile to note the MCP mutation. If you use the search box, I think you'll find some other references to the MCP issue in a few places now. We're looking forward to hearing about the wonderful long remissions for Roger and Clint - it gives us all hope!
-
Comment by Steve Greene on June 13, 2009 at 6:40am -
Meg thanks for sharing your story about both Roger and Clint. There are three things in you story that are very useful to people (like me) that are trying to put all the threads together in my own mind to create a complete picture of the different aHUS profiles that are out there. I now know there is a categorization of the "MCP gene defect". I don't know what category my nephew's aHUS falls into. I also was not aware that it is not unusual for aHUS to run in the family ... I wonder if that is true for all types of aHUS or just some? Finally that a key to success might be avoiding dehydration ... this is a wonderful insight to share! Thanks so much Meg for providing this information -- it really helped me... blessings to you and your family! Steve
-
Comment by Heather Still on June 10, 2009 at 9:40pm -
Hi Meg. Not sure if you remember me from our meeting in Bethesda several years back. So glad to hear that things are going well for Clint!
-
Comment by Linda Burke on June 10, 2009 at 3:27pm
-
Welcome Meg to the new interactive website for aHUS patients and their families! Your family has a unique story to tell, and others are sure to benefit from your insights. Desiree is also an adult aHUS patient with a kidney transplant, so that may be a helpful connection for you both. Kelly commented earlier that she was looking to share information, ideas, and concerns about MCP mutations- again, another possible link for your family and hers. The picture of Clint is adorable! Thanks for networking with us as we all work together with the goal of enriching each others lives through shared journeys. Linda
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.
Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.
NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.
************************
NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.
Did you know...
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
Help us fight the battle
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com
Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.
Badge
© 2012 Created by ALPHA MARKETING.
Powered by
You need to be a member of The Foundation for Children with Atypical HUS to add comments!
Join The Foundation for Children with Atypical HUS